I am so terribly tired of all the effort and money spent on fighting the stigma of mental illness. I don’t really think it is that much of a problem. What is a problem is discrimination – the fact that mental illness does not get the health funding that it should when compared to other illnesses. There is a lack of beds, a lack of community supports, a lack of support for family caregivers and I could go on.

I feel a bit like Howard Beal did in the classic 1976 film written by the brilliant Paddy Chayevski and I am mad as hell. His famous line can be seen here

A couple of things have set me off. The first was the appointment to the Order of Canada of Professor Heather Stuart who holds the Bell Mental Health and Anti-Stigma Chair, the world’s first anti-stigma research chair at Queen’s University in Kingston, Ontario. I’ve met Heather, have corresponded with her a number of times, and years ago I backed her getting a grant from the Schizophrenia Society of Ontario to conduct a study of stigma by health professionals against those with schizophrenia so I’m pleased for her to win recognition. Sadly, her efforts to promote anti-stigma do not improve the treatment for anyone.

As an advocate in Kingston Ontario continually tells me, the streets of downtown Kingston are filled with ever increasing numbers of obviously untreated mentally ill. Maybe Heather should get off her endowed chair and try to get them some help.

To his credit, the lecturer admits the existence of anasognosia and that people with schizophrenia do have cognitive deficits. However, he suggests that many people fear those with schizophrenia. I think many of us do if they are not treated and are in active psychotic states. He does seem to suggest that doctors should accept the delusions that people have and not ignore their lived experiences. He also suggests that people are told that there is no recovery.

What he did not seem to differentiate between was treated versus untreated and that is crucial. It is true that recovery to a totally healthy state is not normally possible but many people can and do recover to live as reasonable lives as possible. And some don’t. That is the reality.

The notion that people fear those with schizophrenia and distance themselves needs to be qualified. Maybe some do but they are not in the majority. Those people will also fear and distance themselves from people diagnosed with cancer or some other serious and chronic ailment. They are not in the majority. Most people are sympathetic and many will tell you of relatives or friends who also suffer. Despite some tragic examples involving the police, the majority are incredibly sympathetic and understanding.

I remember one case years ago when a man with schizophrenia took off (as often happens) and the police found him miles away from his home. As he was over 21 and not declared incompetent, the police could not take him back to his family but the officer phoned his father 3 hours away and told him he would keep an eye on his son till the father got there. He did, provided cell phone updates and kept it up even when his shift ended so the family could be reunited.

When David Dawson was shooting his feature film on schizophrenia, Cutting For Stone, we needed a police cruiser in the middle of the night for one scene. Two cruisers showed up for us and one of the cops commented that if any group needed more exposure it was people with schizophrenia.They were happy to accommodate (available on Amazon for streaming) and I got a chance to ride in the front with the sirens blaring.

Many people with schizophrenia are willing to expose themselves to the public by telling their stories in books. Many of them I’ve published thanks to the willingness of people like Sandra Yuen MacKay, Erin Hawkes-Emiru, the late Dr Carolyn Dobbins, and Sakeena and Anika Francis. Others have done the same in books and blogs like Christina Bruni, The Unashamed Schizophrenic and others. Some have exposed themselves in documentaries like the ones in the film The Brush The Pen and Recovery directed by David Dawson (available on Amazon for streaming).

The same goes for those with bipolar disorder like Victoria Maxwell and many others including a new book called Mad Like Me. This one was originally submitted to me but I turned it down for a number of reasons. The author, however, did take some of my suggestions, rewrote it and had it published. Or, a book that I reviewed in these pages called Shatterdays Bipolar Lives

I often receive requests from people with schizophrenia offering to tell their stories as I did last night from a gentleman in California. His e-mail to me stated “I have been contemplating writing this manuscript for several years,and have decided to now ,because I feel there is no shame in having a mental illness, as it is no different than having a disease such as Epilepsy. I wrote this book to be in an advocate/activist position to be able to speak for those who cannot. If my book, my story, can help just one person, one family, it will have been more than worth the effort of writing it.”

I think it would be well worth it for mental health agencies to run writing workshops for people with mental illnesses.

But, let me circle back to the issue of stigma. Who in their right mind would not be fearful of a dishevelled ranting, untreated schizophrenic wandering down the street. I almost hit one the other day when he suddenly walked out into the traffic of a busy street impervious to the traffic.

The best solution to this stigma was offered by Dr Stuart’s partner, the psychiatrist Julio Arboleda-Flórez, He wrote:

The lesson to be drawn from these papers is simple: helping persons with mental illness to limit the possibilities that they may become violent, via proper and timely treatment and management of their symptoms and preventing social situations that might lead to contextual violence, could be the single most important way to combat the stigma that affects all those with mental illness. While most myths about mental illness can be traced to prejudice and ignorance of the condition, enlightened knowledge does not necessarily translate into less stigma unless both the tangible and symbolic threats that mental illness poses are also eradicated. This can only be done through better education of the public and of mental health service consumers about the facts of mental illness and violence, together with consistent and appropriate treatment to prevent violent reactions. Good medication management should also aim to decrease the visibility of symptoms among patients (that is, consumers) and to provide better public education programs on mental health promotion and prevention.

I have schizophrenia, they tell me. They line up my symptoms and thrust the diagnosis in my face. So here are your pills.

When I stop taking those medications I lose my grip on reality, but I don’t know this. They – my psychiatrist, a Security guard, the police – bring me to the hospital (again) and I am told (again) that I have schizophrenia.

No, I don’t. People with schizophrenia don’t have a Master’s degree in Neuroscience. I’m simply too intelligent to have schizophrenia, right?

Then why do rats eat my brain, why do Voices yell at me, and why am I being stalked by a homicidal man with a sniper gun (I’ve got proof)? I assume it is normal. I don’t have any friends and I have withdrawn from my family so no one but Them (doctors, nurses – everyone in league with the Enemy) diagnose me, treat me. So here are your pills.

I remember my first antipsychotic. I was in the psychiatric hospital after a failed suicide attempt and, after drawing me out, my psychiatrist decided to start me on risperidone. She did not tell me what it would do. Soon, my Voices were quieter, quieter, quieter. Rats stopped chewing and the sniper stopped tracking me. Wow, I thought. Those were symptoms? That was schizophrenia? The scientist in me knew it wasn’t a simple placebo effect, since I had had no idea what those little pills were going to do. I became open to the idea that I might have schizophrenia.

Yet repeatedly, over the next half-dozen years, I would leave the hospital quietly, only to be forcibly returned after “decompensation due to medical noncompliance.” That is, I fell into the oh so common trap of thinking: “I am doing well. I don’t need these pills any more. I’m cured.” Round and round the revolving door.

You would think that after all of this, I would surely realize that I had schizophrenia. I didn’t, though. I was under the heavy spell of anosognosia: the physiological inability to recognize that one has an illness. It is common, and strong, in schizophrenia. But in me, equally strong was a scientist. So, experiment number one: recall that first antipsychotic? Well, it did strange things, things I was not expecting.

My second hypothesis: maybe I was just in it for the attention. When psychotic and certified in the hospital, I would bash my head against the concrete wall until both it and I were bloody; that bled the brain-eating rats out. It also earned me restraints, physical and chemical, which I raged against. I screamed and kicked and cried but the strong Security guards tying me up and the nurses with injections (rat-laden!) for me always won. That was attention, I reasoned. So I decided to do it. Bang head, fight restraints, scream over injections… it was a good show, but it felt foreign. I was an actor, not a true patient, that time, making me realize that all the other times had actually felt real.

Then there were the Voices that harassed me continually. They yelled at me to kill myself, forbade me to buy even a coffee, and hissed at me if I dared talk to anyone. When these receded with medication, I later – when everything schizophrenic seemed out of focus – I attempted a third experiment: I tried to create Voices. I thought really hard but to no avail. All I could generate was the “little voice in my head” that everyone experiences from time to time.

Finally, convinced I was too smart to have schizophrenia (an idea of mine echoed by an arrogant psychiatrist), I fought to keep an A+ average at university. I earned prestigious scholarships (two NSERCs, a Michael Smith scholarship, and various others). That’s not something someone with schizophrenia does, right? No; there are other people with schizophrenia who attain graduate-level education. It is very hard, but it can be done, particularly when the person is stable on medication.

So a neuroscientist with schizophrenia. I tried so hard to prove I was immune to schizophrenia, but because of my experiments, I am convinced. It was a relief of sorts: an explanation, a treatment, a hope. It came to prove not that I didn’t have the disorder, but that I can live beyond it. For me, medication is key; taking it reliably, the master key. And I become a person with schizophrenia who is well.

This blog first appeared in Huffington Post on March 17, 2013. Erin Hawkes (now Erin Emiru) is the author of When Quietness Came: A Neuroscientist’s Personal Journey With Schizophrenia published by Bridgeross and available in print and e-book format.